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Anyone have/had a Recto vaginal fistula?

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Posted 12/4/2012 11:54 PM (GMT 0)
Went to my GI today and was told there is a strong possibility I have a rectovaginal fistula as there was pus coming out of the vagina. He says that is also what would explain the inflammation in the perineum. But they aren't sure as they can't look into the vagina. So now I have to go to a gynecologist to check if it's that or something else. Oh I hope it's not a recto vaginal fistula! But he says that it is most probably that. I was so nervous my heart rate was up to 132. I really don't want another fistula. But if it's there, there is nothing I can do except deal with it. cry
They also want me to go do an MRI of the pelvis and abdomen. Since I'm having stomach pains and nausea and 4 to 5 bm's a day. They want to check the abdomen to see if there is inflammation. And they will also be able to see if there are fistulas or abscesses. I don't know how that works as I have never had an MRI. In the meantime they're giving me cipro and flagyl to deal with it.

Anyone here had a recto vaginal fistula? What are the symptoms? I have discharge, redness in the area, pain and soreness, and pain in the perineum.
Posted 12/5/2012 4:05 AM (GMT 0)
Wait, why on earth can't the GI look to see if it's a recto-vaginal fistula? That's ridiculous. Your symptoms do sound like it though. It hasn't been too bad; I almost healed up after I got on Remicade, but then it reopened with c. diff. I had a colorectal surgeon put in a draining seton a few weeks ago, and in February I'll have a repair surgery. It's almost a bit easier to repair those ones, from what I understand, because they can take tissue from your labia and use it to make a patch on the vaginal side. There's a chance it won't take, but you deal with it as it comes. It hasn't hurt my sex life too much, either - but I have a very understanding and kind husband.
Posted 12/5/2012 3:16 PM (GMT 0)
Well, whatever it is, and it sounds like your gastro is right on, I certainly hope that it responds quickly and well to treatment, Lovely. Good luck and God bless!
Posted 12/5/2012 3:51 PM (GMT 0)
Hello lovely985

I am going through similar to you.  I've had fistula's previously but always draining out on to my skin.  I've been ill since July with symptoms worsening until not only puss and air coming out of my vagina but poo aswell.  An initial MRI showed no conclusive evidence but I feel this is more than enough evidence to go on.  Another MRI and internal ultrasound has been arranged with funding for Remicade applied for (I'm from the UK so that is down to my local primary care trust).  This worked at healing my fistula's previously so hopefully this will be the case in this situ too.  I also have been put on flagyl and cipro and while only a few days into a months course the pain which I have been suffering with is much better.

Please keep us updated on your news, while having fistula experience in the past this is all very new to me too.  While I never want anyone else to suffer there is comfort that we can sypmathise, moan, cry and hug (even though a cyber one) here.

I'm thinking of you.

Debbie

Posted 12/5/2012 4:11 PM (GMT 0)
Thank you, it's nice to know I'm not alone, cookie38. It is so hard dealing with this:(

And now I'm trying to see if the gyno will do the pelvic exam with sedation as just a light touch around the vaginal opening hurts like crazy. It's red and inflamed in the area.
So I can't imagine them putting a specula in there and scraping and taking biopsies. So hopefully I get an okay on the sedation.

And scifigal2k, my GI said he wants to make sure there isn't something else going on. Even though he's fairly sure it's a rectovaginal fistula. He wants to be 100% sure.

I'm on Humira weekly and Imuran twice a day. So I don't know why this is happening while on this medication
Posted 12/6/2012 2:26 AM (GMT 0)
Ok, that makes more sense! I thought he wasn't going to diagnose at all, and I thought that was ridiculous. One thing you and @cookie might want to ask for is a barium test - they put barium in your rectum and see if it goes anywhere else by using an x-ray to track it. MRIs can be a bit useless with diagnosing fistulas. I agree that stool, gas, etc. coming through the vaginal tract should be more than enough evidence.
Posted 12/6/2012 5:33 AM (GMT 0)
I am praying that you do not have a recto-vaginal fistula. I do. It is nothing but a nightmare. You can tell by passing gas, excessive, through the va-gi-gi, or passing feces. It was one of the most painful experiences that I have had. That area is so sensitive. As we speak, I am getting ready for yet another surgery, to repair it. That is how my 90 day Ilestomy turned into 19 months now?? grrr. Just make sure that you have a great surgeon. I'm at Barnes St. Louis and after 3 years, not too impressed!!
Posted 12/6/2012 11:01 PM (GMT 0)
I have a r/v fistula.  I've had it since Oct. 2010.  I was supposed to have flap surgery in Jan. 2012 but when my surgeon went in to do it I had a bad infection and another fistula (anal only) so he ended up cleaning out the infection and putting in 3 draining setons.  We let everything heal and then I had the flap surgery in May 2012.  The surgery didn't work so in July he went back in and put one draining seton (the surgery improved things 50% he said so it wasn't as bad as the first time).  I currently still have the seton and plan to get another flap procedure sometime early next year.  My surgeon is going to bring in a specialist, a guy who specializes in pelvic reconstruction, to assist him.

My symptoms were pain, swelling, gas and feces through the vagina, and discharge.

Posted 12/7/2012 1:52 AM (GMT 0)
Update: I called a gyno yesterday and when I explained why I wanted to see him he totally refused to see me. Said I was a high risk patient and they only do routine pelvic exams, Pap smears, things like that. He even advised me to not call anyone in the area because no one was going to want to do that. (Aside from the possible fistula, he didn't like the idea of breaking my hymen as I'm a virgin and a lot of the doctors in my area are really conservative and don't want to do that. me personally I don't care about that I just want to know what's going on) rolleyes

So I messaged my GI and asked him to give me a referral to a gyno at the same hospital I see him at. So they're going to make me an appt with a gyno there, which I looked up and he seems really good. He specializes in high risk pregnancies, so I doubt he'll refuse to see me.

Also, I don't have feces coming out but I'm wondering if it's because I don't have watery stool. Or does it come out from the vagina regardless of whether it's formed or watery? Because that is the only symptom I don't have. I forgot to mention in my symptom list that almost every time I have a BM my vagina hurts. Is that related?
Posted 12/9/2012 6:16 AM (GMT 0)
I have a recto-vaginal fistula and for quite some time anytime I had watery stool it would pass through and burn the hell out of me. I could be shopping and if I have to use the loo I can't wait or else it will go right through the vag... Awful! I recently went to Cleveland Clinic and saw Dr Deitz and he doesn't want to do flap surgery because the hole is very small. He says that if he attempts this he could only make it worse and create a bigger hole. He wants me to control the diearria. I hear allot of stories of surgeons jumping to cut. But I hear if u get one fistula u r going to get more later on down the line. Honestly it is embarrassing, humiliating and disgusting but it's not gonna kill me. Also to to dx me I had to see a specialist and not a regular gyno I went to a dr that specializes in pelvic cancer. Goodluck...I hope u get Ur answers!
Posted 12/9/2012 9:12 PM (GMT 0)
My GI reacted the same way when I went in for a routine exam - was too afraid to even do a pap smear. When I told my colo-rectal surgeon that a few weeks later, she just rolled her eyes. I'm doing a repair surgery on Feb 1 provided I don't flare with Crohn's or pancreatitis in the meantime, and I don't have any infection (bacteria or yeast). I'm praying it works!
Posted 12/18/2012 4:41 PM (GMT 0)
Lovely - you'll want to see a colo-rectal surgeon.

I'm in a similar situation as elexis, except I have a jpouch instead of a rectum: I have a (jpouch)-vaginal fistula which currently has a seton in. I also went to Cleveland Clinic (Dr. Hull), who gave me pretty much the same response as elexis's dr. Dr. Hull did not believe a plug, or a patch, or LIFT or any surgical intervention other than a pouch redo (or removal) would have a remote chance of working in my situation, due to the jpouch - which makes things quite a bit more complicated than your situation, I believe.

My fistula was eventually found via MRI - yes, MRIs can locate fistulas.

And - the thicker your stools, the less likely you'll pass them through the fistula. In addition, the drainage from a fistula, at least in my experience, is rather psychotic. Sometimes there's definitely more than others. So try to keep your stools thick if possible. Keep the area as clean as possible (I use a bidet or little spray bottle after every BM).

Please keep us updated - and best wishes --
Posted 4/28/2014 3:17 PM (GMT 0)
Well I'm quite young but the symptoms have been ones of vaginal fistula and I was really quite worried at first I thought I was just mental and I had some kind of horrible unknown about problem so thank you for reassuring me there are others going through the same xxx
Posted 4/28/2014 6:07 PM (GMT 0)
GO see a COLORECTAL doc not a GI doc there more into the fistulas ,, the GI is a one stop shop for all...and they try to do it all....
Posted 4/29/2014 7:47 PM (GMT 0)
My GI was no help with my fistula problems and he certainly wouldn't do a vaginal exam. I'm really surprised that a gynecologist would tell you such a thing about no other gyn. touching you as you're considered high risk. Wow. How ridiculous. Sounds like he's in the wrong business.

Hopefully they'll get you into someone soon. I know my surgeon got me in to a gynecologist the same day when he found out I still had a fistula after my surgery. Apparently there were two. So going through your GI is the best route I would think.
Posted 11/15/2016 12:19 AM (GMT 0)
Hi, I see there has been chat regarding rectovaginal fistulas on here but from a while ago, so hopefully someone can still help me!!
I have a fistula from "medical misadventure". I have had 2 failed repairs. Hopefully going for the 3rd in the new year (fingers crossed).
Every so often I must eat the wrong food, or something that doesnt agree with me & I get a terrible burning feeling in my vagina & surrounding area. Besides tramadol & not moving, nothing helps - its the worst feeling ever!
Has anyone had this? Do you know something to help with the pain??

I have changed my diet to try & eat only an alkaline diet but this is hard to stick too.
Any help, advice & support would be appreciated - I totally feel on my own & no one around me understand :(

Thanks x
Posted 11/15/2016 2:04 AM (GMT 0)
Welcome @dapenu, there has been many more recent conversations! I think that you should start a new thread so that more people will see it and comment on it!
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